ONCE UPON A GENE - EPISODE 184 - More of Everything - How I Became a Better Parent to My Child With Extreme Special Needs By Lifting My Emotional Burdens With SYNGAP1 Mom - Janie Reade

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Janie Reade is an author and mom to three adult sons, one with a severe neurodevelopmental disorder caused by a mutation in the SYNGAP1 gene. We'll talk about her unique perspective as a parent and also about her book, More of Everything: How I Became a Better Parent to My Child with Extreme Special Needs by Lifting My Emotional Burdens.

EPISODE HIGHLIGHTS

Tell us about yourself and your family.

I am married with three adult sons. Joey is our second child and he lives in a group home. When he was younger, he wasn't developing as he should and started biting his hand. When he was little, he wasn't hurting himself, but as he aged stress made biting worse and there was little I could do to help. After he went to a group home, he stopped biting a couple days later.

Can you talk about your book?

The goal of the book was to show who I am and how I think. The first portion of the book is a series of vignettes starting at age four, going through age 21. At the end of each is a looking back section where I summarize about that time and a lesson section about my takeaways. I also talk later in the book about acceptance and frustration. Finally, I talk about parent coaching, which is what I do.

Growing up with Joey, did either of your other two sons grow up and go into a compassionate-led career?

No, but they're both very compassionate and emotionally-aware people. My oldest son volunteered as a peer counselor when he was in high school. It was a way for him to talk to people and help them through problems. He has a very emotionally deep soul. My youngest son has always been very inclusive and a connector of people. After Joey moved and I was very sad, my oldest son told me that our family was a group project and that, just like in a group project, we had to do what was best for everyone.

How did you find community support and what did it change for you?

I tried support groups and they weren't a good fit due to the severe intellectual disability my son has. When he was younger, I was told he would catch up, so I didn't fit in an intellectual disability group either. I didn't find people for a long time.

LINKS & RESOURCES MENTIONED

The Two Disabled Dudes Podcast - Episode 215 – Birthday Parties Can Be Tough

The Disorder Channel

Emotional Agility: Get Unstuck, Embrace Change, and Thrive in Work and Life

More of Everything: How I Became a Better Parent to My Child with Extreme Special Needs by Lifting My Emotional Burdens

Janie Reade Website

Parent Coaching Institute

Book Launch Webinar with Syngap Research Fund

Reading your genetic report

When your report contains a Variant of Uncertain Significance finding

An early blog about the amazing and essential service Ciitizen/Invitae provide for rare disease

CONNECT WITH JANIE